He found how important knowledge and understanding is in helping to manage the impact.
In 1950 John was hospitalised with polio, but with no apparent paralysis, and otherwise was active and fit; playing judo and getting into one of the secondary school football teams.
In 1958, after an undiagnosed illness requiring bed-rest he became seriously ill and was admitted to hospital (Sheffield Royal Infirmary) by his GP. A clot had formed in the left thigh and had become infected. Treatment involved three hourly injections of penicillin, heparin and pethidine.
The leg became swollen. He assumed that this would be temporary
After the infection had been treated John got out of bed to find the leg became swollen. He assumed that this would be temporary. After discharge the condition was monitored by his GP who measured the leg over a period and then went with him to see the consultant. When John asked what he should do; exercise, rest or whatever, the consultant pursed his lips, shook his head, and said ‘there is nothing you can do’.
John was issued by the hospital with a thigh length compression stocking with a suspender. It looked like a women’s nylon stocking. He tried wearing it only once. He was also was prescribed half a tablet of aspirin.
From 1960 onwards there were occasional instances of phlebitis, and a varicose ulcer on his leg, resulting from the damaged venous flow. No GP suggested wearing compression stockings but he did take to wearing a Scholl Superlastic below knee stocking which he bought.
John awoke to find his right leg swollen from the foot to the top of the thigh
In 1982 John awoke to find his right leg swollen from the foot to the top of the thigh. There was no pain, but he knew immediately what it was and drove to see the GP. As the GP seemed uncertain what to do John drove up the local hospital and was admitted where he received heparin treatment.
At this time in John’s life he had quite a demanding job and so used to go for a jog of between one and two miles most evenings. He had also reached blue belt level at judo, so the DVT was a complete shock.
After discharge from hospital John asked to be referred to the Thrombosis Unit of Kings College Hospital in South London. They admitted him overnight, carried out various blood tests, and then issued John with two pairs of below knee stockings which he has worn more or less daily, ever since. These enabled John to work normally until retirement; to walk in the Lake District and the Pennines; to exercise fairly normally in the gym. And now, as John explains, he would say that he is at least of average fitness for his age.
Recent times
John is now on several therapies including, Amlodipine, Candesartan and Atorvastatin.
However in more recent times John realised that he still did not know why he had a history of DVTs and decided that it should be investigated. On the advice of his clinicians, he sought a referral and a number of tests were carried out that and identified that John’s blood contained Factor V Leiden, so he now takes a daily dose of 10 mg of Rivaroxaban.
In John’s words he says:
Some General points
- I hope now that patients get the advice they need to live with post-thrombotic syndrome. Much of this depends upon GPs.
- Sigvaris below knee CCL3 stockings have been extremely important in enabling me to live a normal life. I have found thigh length stockings to be uncomfortable and restrictive of movement. (I have used Mediven stockings which are also effective and I expect there are other brands.)
- Regular exercise is a necessary part of recovery and maintaining health.